Caregivers' active role in palliative home care - to encourage or to dissuade? A qualitative descriptive study.(Research article)

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Family members have always been active in palliative home care, but in modern times death is no longer merely a family event. The role of the professional extends into the home of the dying, where primary health care and palliative care teams can provide highly specialized treatment for the dying. The spouse's involvement in this treatment is often a prerequisite for home death.

Home deaths have been shown to be associated with both better bereavement response and better physical health post-bereavement than inpatient deaths [1] and it has been shown to be important to the family member to have been doing something for the loved one who died [2, 3, 4].

Family caregivers seem to cope better with bereavement after a loved one's death if sufficient support is provided during the palliative stage of disease at home [5, 6, 7, 8, 9, 10, 11, 12].

However, literature has shown that whenever family caregivers take an active part in the patients' treatment it might have a negative effect on the relatives' mental and physical wellbeing [2, 13] and that the relatives sometimes experience an unspoken pressure from the professionals to be 'professionals' rather than loving relatives [5].

Hence, we do not know in which situations active involvement of the spouse, e.g. administering and being in charge of oral or subcutaneous medication or taking care of the patient's personal hygiene (table 1), could be harmful or have a negative impact on their experience of the palliative course of disease. How do we as professionals in palliative home care strike a balance between the spouses' wish to help their loved ones with all the positive effects it might have on the patient and spouse and the spouses' resources with the negative effects it has to exceed their personal limits?

Table 1 caption: Active involvement [table omitted]

It follows from this that it is unclear whether the health care professionals should actually encourage and recommend the spouses to take an active, hands-on role, in palliative care. Furthermore we need to know which conditions concerning the active involvement of the spouses should be fulfilled to secure a positive outcome for the spouses and the patients.

Hence, there is a profound need for greater understanding of how and if the professionals should approach the family caregivers concerning active involvement in medical and physical care.

The aim of this study was to explore the impact that bereaved spouses' active involvement in medical and physical care has on their experience of the palliative course of disease.

Methods

This study was a qualitative, descriptive study based on semi-structured individual interviews with seven bereaved spouses from an area (with approximately 30,000 inhabitants) of Djursland, Denmark from December 2006 to March 2007.

Setting

The Danish health care system is financed through taxes and provides free and equal access to health care services. More than 98% of the Danes are registered with a general practitioner (GP) and receive free medical care [14]. Danish GPs provide most of the health care themselves and act as gatekeepers for access to specialist treatment.

Palliative home care in Denmark is performed by the local GP to whom the patient is registered, the primary health care nurses and the palliative care teams organized at the hospitals. In the study area, the distance to the local hospital is up to 60 km and there is hardly any access to home visits by the palliative care team. Specialist advice can be achieved by the GP or the nurses by telephone contact with the palliative team or by admitting the patient to the hospital. Primary health care nurses visit patients at home on a 24-hour basis. GPs mostly visit patients at home during working hours and some allow their patients to contact them during out-of-clinic hours by providing the caregiver with their private telephone number. Relatives who act as caregivers for terminally ill patients can be granted paid leave from regular jobs by the social security system.

Sample

The respondents were all spouses of terminally ill cancer patients in a palliative setting at home (Table 2). All 27 GPs in the local area were contacted by E-mail, and informed about the project and its aim. They were asked to refer bereaved spouses fulfilling the inclusion criteria to the authors. Five respondents were referred from GPs and two respondents were identified among the relatives of deceased patients of one of the authors (AW) (Respondent nr 4 and 7, table 2). All spouses asked agreed to participate. The demographics are seen in table 2. The patient male/female rate was 4/3, the average patients' age at time of death was 62 (Range: 53;72) and lung cancer was the dominating cancer type. …

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